— New Book Details Voluntarily Stopping Eating and Drinking
When supported by knowledgeable providers, the process can be peaceful and meaningful.
By Kelly Webster
Quality of life can diminish considerably for people living with incurable or terminal diseases. They have thoughts and questions about what the end of their life will look like. They may wonder about their condition deteriorating, losing their dignity and autonomy, and being a burden on their family members. They also worry about suffering. Sometimes, discussion turns to potentially hastening the end of their lives.
In a new book titled “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death,” University of Rochester Medical Center professor emeritus Tim Quill, M.D. provides realistic descriptions of what happens to a person when they consider and potentially choose VSED (voluntarily stopping eating and drinking). He addresses misconceptions of this poorly understood practice, which can cause people to inaccurately picture uncomfortable starvation and unrelieved suffering. The truth is that when undergoing VSED supported by knowledgeable and caring physicians, the process can be peaceful and meaningful.
“I have been engaged in research and discussions around medically assisted dying for many years. In New York State, physician-assisted death is not legal, but many terminally ill patients want and need help figuring out what their end-of-life options are,” said Quill. “VSED has been a legally available option in the background for some time now, but most people don’t know about it or fully understand it. We wrote this book to help physicians, patients, and families learn about the process from a clinical, legal, and ethical perspective.”
A Sense of Grief and Relief
Chapters from the book include several real patient stories including a contribution from Robert Horowitz, M.D., URMC division chief of Palliative Care. As a physician, Horowitz has extensive knowledge of end-of-life situations, including patients who have chosen VSED. However, he gained a unique perspective when his own mother who was facing a progressive illness wanted to discuss her future options.
At that point, she was in the early stages and had the capacity to make decisions, but she feared what would happen to her as the disease progressed. The last thing she wanted was to spend the rest of her days dependent, frail and lost in a nursing home. Now facing the situation as her son rather than her physician, Horowitz and his family held many powerful conversations with his mom and her physician. They ultimately agreed that when his mom decided the time was right—that living with additional losses incurred by disease progression was untenable to her—they would support her choice to die by VSED.
The term “grief and relief” appears many times throughout the chapters, because end-of-life can be distressing for both patients and families, but the assurance that a loved one will not suffer a worse fate is a blessing. Horowitz’s contribution to the book details his, his mother’s, and their family’s experience in a way that humanizes this medically and emotionally complicated situation.
Empathy is Keyfor Discussion
Both physicians and patients are often hesitant to bring up end-of-life planning because it is difficult to talk about, and because of legal and ethical concerns.
This book approaches the topic with a deep sense of empathy for all involved. When a patient and family begin to consider the road ahead, it’s important that they understand all options available, and receive comprehensive information to help them make fully informed decisions.
For a patient worried about their condition dragging on for months or even years, the desire to bring their lives to a meaningful end can bring closure for themselves and their families. The process of VSED usually takes approximately ten days to two weeks from initiation to death, provided the patient strictly adheres to the process. This gives the patient and family a very meaningful but finite period of time to come together, make final plans, and say farewell. For families and loved ones, the patient finally finding a peaceful escape can be a blessing.
The key for any end-of-life situation is open communication. This book can be a tool for opening up the conversation between family members, and/or for a patient to start a discussion with his or her physician. Without doubt, these conversations can be difficult. However, they can be made easier with the knowledge and compassion offered in this book.
Quill is world renowned for his progressive discussions around palliative care and end-of-life situations. In addition to his clinical role at URMC, he is also a board member of the Death with Dignity National Center in Portland, Oregon. In 2013, Quill was included on a list of “Hospice and Palliative Medicine Visionaries” by the American Academy of Hospice and Palliative Medicine.
Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.
By Kevyn Burger
Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.
Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.
Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.
Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.
“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”
In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.
“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.
“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”
Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.
They also need family support.
“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”
For Hauser, that partner is her husband, David McNally.
Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.
“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”
Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.
“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”
But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.
“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”
A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.
Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.
“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”
Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.
“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”
A good death
Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.
“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”
Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.
“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”
Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.
“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”
To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.
“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”
Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.
“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”
A little known option
Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.
By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.
“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”
Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.
“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”
Leading the ship
Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”
The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”
In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.
Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.
“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.
Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.
“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”
For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).
In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.
She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.
“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”
Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.
“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”
A friend of a friend chose to die via VSED (voluntarily stopping eating and drinking) recently. I guess there is an acronym for everything these days. But I had never before heard of this one. There are, apparently, many books, videos, and podcasts describing this method of choosing to die. As a hospice person for decades, of course I have known of people choosing to die this way. It does happen from time to time. I did not realize that this very personal choice had both a formal name and a movement to support it.
We live in a state with a death-with-dignity option. However, the processes and the hoops a dying person must jump through in order to fulfill that wish are so very complicated that, in my experience, most folks die before all the red tape has been completed. That law allows a person to self-administer a lethal drug. However, to obtain the required drug, a person must be seen to be mentally qualified and within the last six months of life. That effectively excludes a person with progressing dementia. By the time you have only six months to live your mental capacity will likely be severely compromised.
VSED, on the other hand, is entirely within the control of the individual if they decide on that route. A caveat: they must have a caretaker willing to assist them and that person is agreeing to a very challenging role.
Is VSED the same as suicide? Those who champion it say it is elective death (at a time of their own choice) since most of these people know already that they are dying of some illness that over time will rob them of any dignity. If you have witnessed a parent declining into dementia and you, too, have been diagnosed with the same disease, VSED might look like a possible option. Degenerative diseases like multiple sclerosis or ALS conceivably might make VSED look attractive.
What is the process like? It appears that there are lots of moving parts to consider before the person actually ceases to eat and drink. First and foremost, good medical supervision is imperative. If your local hospice and/or palliative care physician will assume that role, that would be ideal. Those professionals are specially trained to provide medical aid and support to the dying and they know their stuff when it comes to keeping someone comfortable. The partner/caretaker is probably the cook, nurse, driver, case manager, liaison with doctors, and full-time support person for the patient who is dying. They, too, must get their own needs met and be taken care of. So, likely, paid caregivers who understand the process must be interviewed and hired.
There is no one way that all this occurs. In general, the person who wishes to die makes the decision to stop eating, and most critically, drinking, and sets a date to start. We can go quite a while without food. But liquid is a whole other story. There are people who regularly do intermittent fasting as a way to diet. There is a real “high” that humans experience after fasting for a length of time, which is the result of our bodies going into ketosis.
After a few days, hunger is not such a big issue, but the need for liquid is. The caregivers have a humidifier running in the patient’s room, swab their mouth with damp swab sticks, put drops in their eyes, and later squirt a fine mist into the mouth. The doctor prescribes low dose morphine and/or a fentanyl patch to keep the person calm and comfortable. As the days go by someone needs to turn the patient regularly to avoid bed sores. Bed baths and peri-wash, changing of clothes and bed linens are a daily regimen. Eventually, the patient slips into a coma. Consciousness is gone but the body ticks on longer until it can no more.
The caretaker has to watch all this, and it cannot be easy. You would have to love someone an awful lot to endure it.
Some patients diagnosed with terminal illnesses or chronic progressive diseases find the prospect of a long decline, great suffering or significant deterioration to be intolerable.
For those with the desire to hasten their own death, one option is to refuse to swallow food or sip liquids. The practice, known as “voluntarily stopping eating and drinking,” or VSED, typically results in death within 10 days to two weeks.
“People have been dying this way since time began. It’s a natural way of dying, but people should know they can’t do this by themselves. They need to be attended by those who are knowledgeable about symptom management who can help them have the least bad death possible,” said Judith Schwarz, the clinical director of End of Life Choices New York.
A registered nurse with a Ph.D., Schwarz has written and lectured widely on the practice and advised hundreds of people who have chosen and followed through with the VSED option.
Now she has collaborated with a palliative care doctor, a bioethicist and a law professor specializing in end-of-life issues to co-edit a comprehensive, first-of-its-kind book on the subject.
“People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process.”
Hastening death via VSED is not an impulsive decision. Schwarz describes the people she advises about how to die this way as “well informed and determined,” embarking on the process after securing aid from experienced guides.
“They understand that they need family and caregiver support, twenty-four/seven care at the end from people who understand why they made this decision,” she said. “They need access to palliative or hospice oversight. Medications must be available to the patient to aggressively treat symptoms of pain.”
Co-author and palliative care physician Dr Timothy Quill, of Rochester, N.Y., finds that many of his patients who have pursued VSED shared a personality type.
What a VSED Patient Can Expect
“Of what I call the last-resort options, VSED is the mostly widely available and the least widely described,” he said. “People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process. They are on the sicker end of the spectrum and want an option to speed things up. They are prepared for the end of their life.”
The new book offers case studies that detail what a patient who chooses VSED can expect in the dying process
“At first they’re up and around and it’s a time for family to come together, for saying goodbye. They gradually get weaker, the world starts getting smaller and they become less responsive,” said Quill. “As they get dehydrated, their blood pressure drops and that causes organ failure.”
After the first day of no food or liquids, hunger tends to ease, but thirst becomes overwhelming. But even the use of ice chips or hourly sips can prolong the process. So, an oral care strategy that includes swishing and spitting, swabbing and using mists that don’t rehydrate the patient must be planned.
Schwarz notes that most VSED patients experience agitation, delirium and/or hallucinations in the 24 hours before death.
“Everyone has a period of this, and they need anti-anxiety meds and strong tranquilizers to medically manage symptoms so that the delirium is not intrusive, frightening or awful,” said Schwarz. “At this time, family can be present, holding the patient’s hand or playing the music they like. I say, ‘Don’t disturb them, as they are on their journey leaving this world.’ I can assure them that their loved one is not suffering. At the end, they stop breathing and their heart stops.”
Four out of ten family doctors in Switzerland have dealt with at least one patient who refuses all solid or liquid food in order to die, according to a study. Most doctors have a positive approach to the issue.
The Zurich University of Applied Sciences (ZHAW), in collaboration with the Swiss Medical Association, conducted a representative survey of 750 practising family doctors in Switzerland on the voluntary stopping of eating and drinking (VSED), also called ante-mortem or terminal fasting.
VSED is the act of a person who consciously refuses to eat or drink with the intention of dying. Healthcare professionals are therefore not charged with providing a lethal drug to the patient but rather with caring for and accompanying the patient from the beginning of VSED until her or his death.
The survey found that 81.9% of family physicians knew about VSED and 42.8% had accompanied at least one patient during the process. On average, doctors with experience of VSED had dealt with 11 such cases.
“We didn’t expect such a high number,” says Sabrina Stängle, co-author of the research at ZHAW. She pointed out that Switzerland still lacks a unified practice in this area.
“Family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process,” the researchers concluded. “Further training and development of practice recommendations are needed to achieve more standardised accompaniment of VSED”.
In any case, 59% of the doctors questioned saw VSED as a natural death process when overseen by a healthcare professional; 32% defined it as equivalent to passive euthanasia, 5% regarded it as suicide, 2% considered it a self-determined end-of-life decision and 1% as an alternative form of dying. One per cent of physicians said they would classify VSED differently depending on the case, which would also be based on the patients’ motives and physical health.
Almost three-quarters of respondents (73%) said this assistance was compatible with their worldview or religion, 58% with their professional ethics; 24% said it contradicted their ethics and 18% were neutral. Those who have already been confronted with it are generally more favourable.
That said, more than half of the respondents said accompanying a person during VSED was stressful.
Our monthly column addresses the same set of questions regarding advance planning and end-of-life care to a variety of people in our community. Our intention is to generate discussion as well as collect information by exploring this one theme seen through multiple perspectives. Possibly we can develop a vision and next steps for our community!
This month’s interview is with Syd Balows who has lived at The Woods Retirement Community in Little River since 1999. He is active as a real estate broker selling homes only in The Woods. He is a charter member of the Death and Dying Group, which started in 2012 with 15 active members. In the Death and Dying group, there have been eight graduates and they all have received Gold Stars. Our current group ranges in age from 67 to 99 years old.
• In your experience in this community and your profession: What has been successfully advanced planning for?
Taking care of business! The 6 Ps says it all: Prior Planning Prevents Piss Poor Performance.
Our friend Sunny was also a founding member of the Death and Dying Group. She planned her dying process. She used VSED (Voluntary Stopping of Eating and Drinking). I spent time with her every day as she was going through the process of dying. Sunny had a list of 18 people she wanted to call and say goodbye to. I would dial the number and then hand the phone to Sunny. She would say, “Hi, I just called to say goodbye because I’m leaving this planet. You have always been such a kind friend to me.” Often times we were holding hands as the tears flowed as she was saying goodbye to her many friends.
Sunny made previous arrangements with a home funeral facilitator. Sunny had chosen to have a Celebration of Life party in her living room. Her cardboard casket was on a table awaiting decorations and wishes for a safe journey. She had a green burial in Caspar Cemetery.
When you make your own decisions you take the burden away from someone else. Be as detailed as you can be to avoid resentment with family members. Many siblings never talk to each other again because of resentments. Think clearly about what you give your beneficiaries. I have seen the men in the family get the business and the women get the furniture.
• What gaps do you see in advanced planning?
Honesty – being truthful about inheritance. If the dying elder changes their mind about who the family executor will be and doesn’t share that change with the family, the results can be a family breakup.
For example, David was told by his parental unit he would be the executor of their estate. The parental unit changed their minds about which sibling was going to be executor. They chose the oldest daughter, RN Ann, to be executor and daughter, RN Laura, to be co-executor. The parents signed all the right forms to make the change of executors but didn’t tell David that he was relieved of his duties. The elders didn’t want a conflict. He was really pissed!
Laura took care of Mom every weekend for four years. After Laura reached burnout, she asked Ann to become the new caregiver. Ann quit her job at the VA, moved out of her home into a suitable rental on the river and became the POA – power of attorney – for health care until the end of Mom’s life, four years later.
David and his sisters disagreed about whether they were to be paid caregivers for their parents, or if they were supposed to donate their time to the estate as co-executors. Because there was nothing spelled out in the legal documents that addressed these issues, it caused a family conflict.
• What have you seen work about end-of-life care?
Acceptance. Accept the things I can’t change. Change the things I can.
Community works. Like-minded people sharing space as we age “right on schedule.”
“Neighbors helping neighbors.” My dying group has had many graduates. We all got to help each other through the process and that has been great for our group. Get the paperwork done to say what you want it to say. “Say what you mean and mean what you say.”
• What gaps do you see in end of life care?
Our local medical system is not very dependable. The fate of the hospital and its chance of survival is having a huge impact on people moving here and people wanting to move away. We have a rural hospital that, to survive, must have an affiliation with a larger hospital group with deeper pockets. We need to have a Medicare-approved hospice, rather than our previous volunteer hospice. A Medicare hospice will serve the community better.
Real estate sales in The Woods in Little River has decreased because elders do not want to live in a community without medical service and a viable hospital. Election years are always bad for real estate.
Recruiting staff for the hospital is difficult for the same reasons that people do not want to commit to coming here if they do not know if their jobs are permanent. But people who live on the coast accept the fact that they will have less in the way of medical care than someone living in a city and plan accordingly. We know that we have to travel for care.
Elder financial abuse is rampant. I have heard of family caregivers removing jewels, a granddaughter set up a meth lab in an elder’s home, changed bank accounts into her name and brought in friends to live freely. There is no return of funds lost.
Many surviving spouses do not know how to deal with household finances. They need help or to have someone in charge to go through this phase. If the spouse who does know does not share the information, it is almost tragic because you have left that person paralyzed.
• Is there anything else you would like to add?
The aging process takes place every day and is frequently life-altering. It is a loss that you can no longer do today what you could do yesterday and that could be frightening. The quality of life is way more important to me than the quantity of life. Healthy aging requires acceptance of the reality of the living and dying process. Birth and death are the natural evolution of coming and going.
Death isn’t that bad a thing, because afterward there has never ever been even one single complaint.
When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.
Today, she struggles to remember multiplication tables.
Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.
“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”
So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”
And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.
In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.
“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”
But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.
In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.
There’s no provision, the letter said, for “decisions to refuse food and water.”
It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.
“It is, in my opinion, a false sense of security,” Terman said.
That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.
“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”
One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.
It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.
Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.
He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.
“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.
The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.
One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.
“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”
Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.
As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.
“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.
Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.
“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.
Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.
In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.
“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.
She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.
When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.
“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”
She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.
“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”
Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.
“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”
Saran said no one from Kendal has reached out to discuss an “alternative path.”
Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.
Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.
The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”
“There’s still a very wide perspective of viewpoints on that,” he said.
Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.
The controversy centers on the definition of those terms.
Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”
It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.
“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”
The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and British Columbia, courts ruled that food and water were basic care that could not be withdrawn.
But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.
Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.
Saran has considered that, too.
“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”
But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.
Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.
“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”